Empowered by lived experience: How Lindsay and Matt found their voices in the narcolepsy community

(BPT) – Lindsay and Matt are both active members of the narcolepsy and sleep advocacy community, drawing from their personal, lived experiences to share with others what it’s like living with narcolepsy. Before they became advocates, each spent years trying to find an explanation for the symptoms they were experiencing and then adjusting to life after getting a narcolepsy diagnosis.Lindsay lived with excessive daytime sleepiness and cataplexy for nearly 20 years before receiving her narcolepsy diagnosis at age 35. She recalls doubting her abilities and dedication to her job in politics, thinking, “Everyone is working long hours, everyone is tired…maybe I just don’t want it as much as they do.” But her diagnosis gave her the reason behind the sleepiness she was experiencing.For Matt, symptoms became disruptive when he was 12 years old, but it wasn’t until he was 25 and a father of two that healthcare providers told him he had narcolepsy with cataplexy. He immediately set out to learn more about the disorder. At that time, there were very limited resources available to help him understand narcolepsy or to connect with others living with narcolepsy who could relate to his experiences.Getting involved in the communityMatt continued to struggle for the next few years and thought that maybe giving back to others could be a good place to focus his efforts. He began reaching out to members of the narcolepsy community on social media and was excited when he got a response from Julie Flygare, the president and CEO of Project Sleep, who is also a person living with narcolepsy. Project Sleep is a non-profit organization dedicated to raising awareness about sleep health and sleep disorders.Julie introduced Matt to Project Sleep’s Rising Voices program, which empowers people with sleep disorders to share their own stories and help spread awareness. As a dad living with narcolepsy, Matt knew he had a unique and important story to share. He started sharing his Rising Voices presentation, telling his story wherever he could to help drive awareness, but didn’t stop there. Matt began leading online support groups for Wake Up Narcolepsy, an organization focused on advocacy in the narcolepsy community, and was featured in one of their Narcolepsy 360 podcasts.One of those online support groups was where Matt and Lindsay first crossed paths. After finally receiving a diagnosis, Lindsay was hesitant to share it with others. Her immediate reaction, which was unlike her typically expressive self, was to avoid telling anyone she was living with narcolepsy.At an emotionally low point in her journey, Lindsay attended an online virtual support group meeting, and hearing Matt’s story gave her hope that things could get better. The two stayed in contact, and Matt encouraged Lindsay to get more involved in the community.Becoming an advocate tapped into Lindsay’s lifelong passion for helping others, and she, too, went on to participate in Project Sleep’s Rising Voices program. As she opened up about her diagnosis with others, Lindsay realized that sharing her story was another way she could drive positive change in the world.Leaning into her professional experience, Lindsay created programs to help raise awareness of narcolepsy, such as the first White House summit on sleep equity in November 2023. The summit focused on sleep health and gave people living with narcolepsy and other sleep disorders the opportunity to educate and share their lived experiences. Matt participated and spoke at the summit, creating a full-circle moment for these two advocates and friends.We all have something unique to offerThere are many ways to learn more about narcolepsy, to help educate others, and to drive awareness about the disorder. Each person has their own individual skills and interests, and that is where their true strengths in advocacy can come through.For anyone who feels overwhelmed, getting involved can start with one small step. Organizations like Project Sleep, Narcolepsy Network, and Wake Up Narcolepsy have a lot of information available and create opportunities for people living with narcolepsy to have their voices heard.People living with narcolepsy can also reach out to others on social media and join an online group or page dedicated to people living with narcolepsy, or connect with someone they know from a support group, virtual or in person. Just as Matt and Lindsay joined together to support one another and make an impact to move things forward for the community, other people living with narcolepsy can work together to do the same.When it comes to getting involved, people can start by helping to drive awareness about narcolepsy by having conversations with their family and friends. Sleep Awareness Week is an annual event dedicated to raising awareness about the connection between sleep, health, and well-being. Sleep Awareness Week is March 9-15, so now is the perfect time to get involved and share your unique story.For more information about narcolepsy, you can visit KnowNarcolepsy.com. There are also narcolepsy resources and information on patient advocacy organizations, so be sure to check them out at KnowNarcolepsy.com/narcolepsy-resources.Harmony Biosciences and logo are trademarks ofHarmony Biosciences Management, Inc. and are used herein by permission.© 2025 Harmony Biosciences. All rights reserved.US-NAR-2400153/Jan 2025